• Liz Pappas

To Everything There Is A Season

"Nothing in life is to be feared, it is only to be understood." -Marie Curie

I'm not sure how to start writing this post. I put it off for awhile because I was afraid of what people might think. Afraid that our acceptance would be seen as inaction or neglect. We kept things pretty well under wraps because we didn't want judgement or negativity during what could be Charly's last hours, so most of you don't even know we thought it was the end. But I guess I'll start from the beginning. Please, be gracious with your thoughts, and put yourself in our position before casting judgement.

The problem was that she wasn't sick. She didn't have a fever, she wasn't congested, she didn't have any bugs. She was just slowing down. Life seemed insurmountable.

Charly had a rough September. We're not sure why, but she seemed to have a steady decline as the month went on. We were needing to give multiple doses of Ativan and Morphine (you know, the standard heavy duty narcotics that we all keep in our medicine cabinets) each day just to keep her comfortable and breathing. She just seemed TIRED. Like each day was more exhausting than the last. The thing about exhaustion is that for Charly when she's tired, she doesn't breathe. Sometimes she has bouts of apnea where she just stops breathing for what seems like minutes, other times it's as if she's having a panic attack and she can't calm her hyperventilating self down. Sometimes these "episodes" would be brought on by a seizure, sometimes humidity in the air, or smoke from a scented candle. But mostly it came from constipation. Who knew going to the bathroom would occupy such an important part of Charly's care plan? Even with supplements, suppositories, and laxatives, there were times when she would go days without a good BM. Anytime she tried to go, she pushed herself over the edge into another traumatic episode.

The problem was that she wasn't sick. She didn't have a fever, she wasn't congested, she didn't have any bugs. There was nothing to fix even if we went to the ER. She was just slowing down. We were warned of this in the NICU and by most every doctor we've seen. Life just seemed insurmountable for her.

Usually we could get her out of an episode with a little extra TLC: albuterol, chest pats, suctioning. Maybe some drugs if she couldn't get it together after 30 minutes. But toward the end of September, her episodes were getting scarier and scarier. Her lips turned blue, her skin turned grey, and her oxygen plummeted into the 50s when she's normally at 100%. She heaved for hours trying to catch her breath, bobbing her head all the while.

For context, when Charly came home in January, she was on .25 Liters of oxygen. On good days, she's at 4L, on the bad, 9-10L. And that's all the flow her little lungs can take.

Her decline happened so gradually for us that we almost didn't notice it. Over the last 10 months she's slept more, seized more, and required more assistance just to stay alive. It's not until someone visits that hasn't seen her in a few months that we realize how inauspicious her life has become. It's like weight loss or gain; when you look at yourself in the mirror everyday, you don't really notice the 10-15 pound difference, but when you compare photos it's blatantly obvious. For us, it was the looks on people's faces that clued us in. Strangers started staring instead of smiling. Friends and family looked sadder each time they left, as if it might be the last time they see her face.

Letting Go

One of the most wearying nights came in late September. Charly had an extreme episode where the pulse ox wasn't even picking up a reading. She was floppy and cold, and we did what we could with the medicine and machines we had. Albeit abundant, they weren't enough. We just couldn't get her oxygen above 70. We did everything we could for hours, but nothing worked. Finally, I disconnected the Pulse ox, grabbed a pile of baby blankets, cradled her on the tiny circular rug in the middle of the nursery, and sobbed. Her tiny breaths against my tears were almost icy.

Andy came in at about 2 am and coaxed me to the living room. We pushed the ottoman up against our L shaped couch to form a make-shift bed and put the baby between us. We gave her an extra dose of Morphine, held her tight, and prayed over her. We knew this day would come, but nothing can ever prepare you for the night that God takes your child.

When I woke, I put my hand on Charly's chest and felt an ever so slight rise and fall. I couldn't even hear her breathing from the intensity of the oxygen streaming out of her nasal cannula, but I knew she was still alive. Relief doesn't begin to describe what I felt in that moment.

I know we will get unsoliciated judgment for our decisions, but I promise the scrutiny with which we view ourselves is even more unforgiving than whatever you're thinking. It's easy to insist that you would have taken her to a hospital or ER, but you're not us. You don't care for Charly on a day to day basis. You don't see her daily pain that can only be averted through the use of narcotics  and benzodiazepines every hour on the hour. You don't have to carry her rag doll body from couch to changing pad to crib all the while wishing she would make the slightest movement. We joke that she's our "Bernie" from Weekend at Bernie's, but take a moment to imagine how deeply depressing that is. We don't have a baby with a disability. We don't even have a medically fragile baby. We have a perpetually sleeping baby for which we change diapers and dress up; all the while we hope for some glimmer of recognition.

An Arduous October October was melancholically tainted with the muted memories of last fall. A mix of excitement and worry, anxiety and elation; I felt wondrous. Like I could conquer the world because my body made a baby. From virtually nothing! I wasn't quite prepared for the juxtaposition of last year's eagerness and this year's despondency.

It wasn't easy, but we made it though the month. Charly had good days and bad days as usual, although the bad had gotten much worse. Maybe we're desensitized, or just more adept at dealing with high-stress situations, but we've become accustomed to the life we're currently living. When Charly's oxygen drops below 10% and she struggles to get above 50, we take it in stride and respond as if these things are normal because they are. This is our normal. Sometimes our baby can't breathe when you change her position or she has snot in her nose or her diaper is wet or literally anything is wrong. Through the Grace of God we have learned to respond and react appropriately. The benefit of being home is that we don't need to wait for doctors' orders; we just do what has to be done because we've seen it time and time again. The only thing on our minds is keeping Charly comfortable. That's all that really matters.

October was melancholically tainted with the muted memories of last fall. A mix of excitement and worry, anxiety and elation; I felt wondrous. Like I could conquer the world because my body made a baby. From virtually nothing! I wasn't quite prepared for the juxtaposition of last year's eagerness and this year's despondency.

I have to admit, the past few days have been some of the most difficult yet. Andy has been tirelessly administering nebulizer treatments, meds, and the cough assist (a machine that simulates coughing) around the clock. For the last 4 months he's been on an extended leave of absence to care for her while I teach. There really are no childcare options for a kid like Charly. She's far too fragile for even the medical daycare, and we were denied home nursing. Medicaid isn't available for us, and even so, what nurse wants to take care of a baby that could pass away under his or her care? I'm sure we could file grievances with insurance to eventually cover nursing, or an adaptive stroller, or a car seat that she doesn't choke in, but why is that the only way? Why do special needs parents need to advocate and fight for what their child needs to survive? We've already spent days explaining Charly's condition over and over to doctors, insurance workers, Early Intervention, seating companies, Medicaid, and more just to be denied what we need. Kids like Charly are an afterthought in our society. They are the exception for which companies don't plan. I've heard "I wish there was more I could do for you" so many times that I expect it when making calls. So yes, we could fight this, but we honestly just don't have the time or energy. Every time we're denied something Charly needs it just reiterates the fact that society doesn't care about the baby on which we dote day in and day out. Our time, attention, and love is solely dedicated to her; we shouldn't have give it to anyone or anything else.

Right now the only thing we can do is look forward. We plan as if Charly will be here, but we know she may not. We've scaled back in case we have months and years left of caring for her on one income. We're not sure how long we'll be in what seems like stagnant living, but it seems better than the alternative. We're on a precarious plateau. Understanding that Charly is dying and seeing her body give up a little more life with each day, but praying that today's not the day it gives up entirely. 

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