Updated: Apr 5
Assorted thoughts on life and death.
“This is her favorite way to spend the day; in mine or Andy's arms. Sleeping. She knows the warmth of human arms, and she craves it.”
Beating the Odds
6 months ago, Charly was given 6 months to live. We're proud to say she is still with us.
Because of the severity of Charly's brain damage, Charly is considered to be terminally ill. She will die. Every 2 months her hospice team gathers to review her eligibility for hospice services, and every 2 months they determine that yes, Charly's still terminally ill. Yes, she still has approximately 6 months to live. It's difficult to live in this limbo. Expecting and waiting for someone you love to die, but praying it's not today. Or tomorrow. Or anytime in the immediate future.
We're fighting like hell to beat the odds. We've gathered more machines and treatments that we administer more and more frequently to keep her lungs in working condition. Her little life revolves around a regimented prescription and respiratory treatment schedule to keep her breathing. She still sleeps the majority of the day. In fact, she's sleeping more than she ever has. She's tired. We're tired. But we're going to keep pressing on until she tells us to stop.
In the last few months Charly has developed seizure activity that has made life very painful and uncomfortable for her. She has sores on her tongue from biting it during spasms. When she opens her eyes, it's as if she looks through us. Most of the time, when she's "awake" it's because she's seizing. Life isn't comfortable or enjoyable for her, and that's all we want in the world. We want her to be happy, feel loved, and feel no pain. Over the past few months, she's needed more and more medication to make this a reality, especially now with seizures thrown into the mix.
I sit with her now on my lap as I type and she is nuzzled into my breast sleeping soundly. This is her favorite way to spend the day; in mine or Andy's arms. Sleeping. She knows the warmth of human arms, and she craves it.
I no longer worry about how we're going to care for Charly when she gets bigger, because I don't believe that day will ever come. Like clockwork, every 2 months Charly gets sick. After each sickness, her breathing requirement increases. Each month, she has more and more breathing episodes. Even without sickness, she struggles to breath, and each seizure sends her system into a panic. Her oxygen plummets, her heart rate skyrockets, and her temp shoots up to a fever. Some days it takes her over an hour to recover to baseline.
Andy frequently sings a slowed down cover of Bob Marley's "Three Little Birds." I'm not sure if he's singing "don't worry about a thing, cuz every little thing is gonna be alright" for Charly or more for him. As much as we sing about not worrying, that's pretty much all we do. We worry about her daily congestion; is it staying in her upper airways or has it moved into her lungs? I listen with my stethoscope and worry, I watch her oxygen monitor and worry. We plan trips and worry. When we discuss dates in the future there's an unspoken uncertainty in the air: will Charly still be here? We don't know, but we operate as if she will. Maybe that makes things easier?
We have to talk about Charly dying because we want it to be as comfortable for her as possible, We don't want her last moments to be with a breathing tube down her throat or with medics administering compressions on her chest. We want her to be peaceful in our arms surrounded by our abounding love. We want her to be at home because that's her favorite place to be. Most importantly, we want her to pass on her terms, at her time, at her own pace.
All of this may sound morbid to most, but I'm writing this from a place of deep thankfulness. Charly was so unbelievably close to being stillborn, in fact, she was born with just a very faint heartbeat and that's it. She was probably hours if not minutes away from passing in the womb. I'm so thankful to have had 9 months and counting of loving memories with my girl. God gave me the ability to process her life and death with her in my arms rather than in a cemetery, and for that I am forever thankful.
If you came into our house to meet Charly, you'd never guess that she's terminally ill. Well, the dozens of machines and cords might clue you in, but as for our dispositions, it may not be so obvious. We certainly have our moments of crying and arguing, but generally we're okay. We laugh with each other, we snuggle, we kiss. We adore our baby, we rock her, we sing to her, we smile when she makes a noise. We almost forget that our time is fleeting because we're soaking up every second. By accepting Charly's imminent death, we're able to live fully for her. We know we're doing everything we can for her medically, so we focus on loving her and helping her feel that love in her own special way every chance we get.