Tips from a Mom and a Child Life Specialist
For some people it can be hard to imagine what the role of a Certified Child Life Specialist might look like outside of a traditional hospital based setting. Many hospital child life programs take years to develop and become fully integrated into the healthcare team.
Guest Blogger, Kimberly Kow, originally published on Scary Mommy
What is it like when someone you love has terminal cancer?
It is one big mindfuck.
The slow agonizing pain of anticipatory grief can chip away at one’s soul and wear you down like waves churning rocks into sand. Anticipatory grief is the thief that steals joy from the present. It is hard to shake this thief. Seemingly happy moments shift reluctantly and without warning into a bittersweet mess of emotions.
You want to spend every day living for each moment. But instead, you spend most days gripped in fear, panic, helplessness, and all the emotions in between. Remaining grateful for what you do have helps. But it doesn’t take away from the fact that you are straddling the unknown and about to barrel toward a place you do not want to be. The longing for more of these moments, for time, is fierce and unrelenting.
I’m a child life specialist. My job is to help other families through trauma and loss. I have sat across from hundreds of parents and siblings and helped to deliver bad news. Offering encouragement and helping families find peace is what I’m trained to do. But it does not make my reality any easier.
In some ways, it makes it harder because I know what to expect. I know that the depth of my pain hasn’t been reached yet. The thing is, it’s really hard to live when you are dying. This is as true for the caretaker as it is for the patient. Because truly living in the moment requires you to acknowledge that there may not be another moment and that you can’t get this time back.
But that is a lot of pressure to squeeze beauty out of every moment when all your loved one wants is for things to stay normal and to pretend that this fucked up thing that is cancer doesn’t exist. But it does. And there’s no hiding it when you want to make plans but you can’t predict how your loved one will feel that day.
On a good day, you want to shoot for the moon and live it up. On a bad day, the littlest things become seemingly impossible. And then comes the mental scolding of why did we get so ahead of ourselves. We “should have known everything can change on a dime.” We kick ourselves for planning too far in advance.
But how can we not when we need things to look forward to? We need that goalpost to be set as high as possible because those are the moments that keep us going. Those are the memories we crave and long for. We risk utter disappointment for the chance of a brief reprieve from reality.
Imagine all the things we want to do in life suddenly having to be pushed up on to an accelerated timeline. Now or never.
Some people romanticize the idea of living for the moment, but there is nothing romantic about it when you are 37 years old with metastatic breast cancer and have no other choice. I want to give my sister the world. I want to cram a lifetime of memories into months. But the constraints of every day responsibilities and realities make this an uphill battle. It doesn’t mean I’ll stop trying. But it does mean there are limits. And that is just one of the many major frustrations of living on borrowed time.
Another is the guilt. It feels selfish taking these trips together and hoarding all these memories when other family members deserve this time too. But I can’t plan for everyone else. The pressure to pretend to feel good when she doesn’t is exhausting. I try to make it clear to my sister that with me she doesn’t have to pretend. She still does so out of her own stubbornness and attempt to protect me. But to a lesser extent.
There are no words that need to be said when she is not feeling well. I always know, and I’m strong enough to hold that information. I don’t need things sugarcoated because I know too much already about what this beast is doing to her body. Sugarcoating things makes me angry. It’s okay for her to say she feels like shit. It should be acknowledged. She should be allowed to live truthfully and to say what we are all thinking. This just fucking sucks.
People often refer to metastatic cancer as mets. But mets sounds cute and sweet. Metastatic is anything but that. It’s a fucking cowardly beast that would be invisible if not for the giant tumor. I want to wrestle it out of my sister. Strangle it to the ground. But I can’t. I keep going back to the same thought of why can’t she just take half of my liver? Like a lizard tail, the liver is supposed to regenerate. I know it’s not that easy, but I wish it were as simple as me just giving part of my body to make hers better.
I have googled article after article trying desperately to find some obscure cure her doctor may not have heard of. Hours looking into that one Facebook video of the study with cancer cells that shrunk in hours! I have bought all the teas and expensive mushrooms I can find on the Internet. You know you’re desperate when you have a $50 bag of dried mushrooms in your Amazon cart.
For now, I know my sister will rally like she always does and face the next day with a bravery that is unworldly and usually only seen in movies. Random acts of kindness from friends and strangers will continue to surprise us and keep us afloat as she fights to navigate the unimaginable. And the almost daily certainty of the absurd will make us laugh. People who say the absolutely wrong thing. A comedy of errors with insurance, scans, a flurry of disability paperwork, medical records, and a wide spectrum of well-meaning people to complete assholes.
It would almost be funny if it weren’t so sad.
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