I can't help it. Today my cup runneth over, and spills on the table, and runs onto the floor... I am flooded with relief and gratitude and love.
To begin with, I have a confession of sorts. Before Jackson was born I had never cried happy tears. I didn't get why or how people did that. Emotions were pretty clear cut, and crying didn't seem to indicate any pleasurable ones. When Emily was born and they lifted her, wide eyed and rosy onto my belly, I laughed out loud. Joy and laughter went together. When we got Jackson's diagnosis, I cried. Low, black tears that seemed like they would never go away. Tears that said nothing but sadness. In the few months since, I have had an increasingly difficult time untangling the different emotions.
Yesterday I was scared. Jackson had developed a cough and started a new course of antibiotics on Monday. Yesterday his cough returned. Not a terrible, wracking cough, but a loose, wet, persistent cough- one that shouldn't be there after 3 days of antibiotics. I knew it was time to call the clinic, and yet I waited. "If he's still coughing in an hour, I'll call." I wanted to stall, deny the possibility he could have an infection or a new bacteria. We have been riding the impossible high of his health for a long time now, and the idea of him getting sick and all of that ending- the thought of having to face our fears with his disease....I wasn't ready for it. I found myself at odds with the world around me, and still unable to admit I was just worried. Eventually I made the call, not knowing if my fears were an overreaction, but not willing to risk the chance they may not be. Our nurse, Stacy reassured me that I made the right call, called in a short course of steroids, and booked us to be seen the next morning. My heart felt like a lead weight in my chest, heavy with 'what-if's.
Jackson slept fitfully, increasing my concern. We rose early in the morning and as Mike suited up for his shift, I made a bottle, prepared meds, gave breathing treatments, bathed Jackson and myself, and managed to get out and arrive early to a days worth of Dr. appointments. (4 month checkup was today too) Jackson got a fresh throat culture, which we will have the results of early next week- to ensure he's getting the right antibiotic. My instincts tell me we may be looking at a new bacteria, but we'll see. For the time being we're continuing the 4x daily breathing treatments and finishing the steroid burst, and he started a probiotoc to help with the caustic effects of some of his other meds on his poor little bottom. IN general, he was given a n impressive bill of health by both his Specialist and his Pediatrician. His weight is approaching the seventieth percentile, when 8 weeks ago he was barely skidding along above the tenth! His height is in the ninetieth percentile, and we were awarded copies of his growth charts as trophies of our success. In the end, the news was not only not terrifying, it was joyful and good and relieving.
This is where the whole hybrid emotion thing comes in. I have tears for all the good news we heard today. My unrestrained glee over these little (huge) triumphs is borne directly of my fear and sadness. I'm finding that this is the biggest impact Cystic Fibrosis has had on me. I have only just touched the fringe of my fear, but I know what it is. It's constant presence gives me strength to live in moments, rather than in days. It's the most absurd gift, this new ability to see the unadulterated bliss and perfection in a perfect second- the time between one blink and another when everything is good. The glint of the sun in the corner of an ambiguously blue eye, renegade baby-scented droplets of water gleaming seconds before they hit my face at bath time...a single, soft and deep sigh as he finally relents to sleep. Maybe that's why my desire to pursue photography is becoming impossible to quench. I want to see and show the world all those perfect moments.
And it has leaked into all aspects of my life. While I am by no means perfect, I have learned to let go of things that don't really matter. I'm not angry. My tangled mess of impure emotions- all of the bliss and the fear, all of the energy and exhaustion...has made me better. I'm better than I was. I am the cup that keeps running over.
(PS I don't really have any thematic photos for this passage, so I just picked out some of my favorite "perfect moments")
To begin with, I have a confession of sorts. Before Jackson was born I had never cried happy tears. I didn't get why or how people did that. Emotions were pretty clear cut, and crying didn't seem to indicate any pleasurable ones. When Emily was born and they lifted her, wide eyed and rosy onto my belly, I laughed out loud. Joy and laughter went together. When we got Jackson's diagnosis, I cried. Low, black tears that seemed like they would never go away. Tears that said nothing but sadness. In the few months since, I have had an increasingly difficult time untangling the different emotions.
Yesterday I was scared. Jackson had developed a cough and started a new course of antibiotics on Monday. Yesterday his cough returned. Not a terrible, wracking cough, but a loose, wet, persistent cough- one that shouldn't be there after 3 days of antibiotics. I knew it was time to call the clinic, and yet I waited. "If he's still coughing in an hour, I'll call." I wanted to stall, deny the possibility he could have an infection or a new bacteria. We have been riding the impossible high of his health for a long time now, and the idea of him getting sick and all of that ending- the thought of having to face our fears with his disease....I wasn't ready for it. I found myself at odds with the world around me, and still unable to admit I was just worried. Eventually I made the call, not knowing if my fears were an overreaction, but not willing to risk the chance they may not be. Our nurse, Stacy reassured me that I made the right call, called in a short course of steroids, and booked us to be seen the next morning. My heart felt like a lead weight in my chest, heavy with 'what-if's.
Jackson slept fitfully, increasing my concern. We rose early in the morning and as Mike suited up for his shift, I made a bottle, prepared meds, gave breathing treatments, bathed Jackson and myself, and managed to get out and arrive early to a days worth of Dr. appointments. (4 month checkup was today too) Jackson got a fresh throat culture, which we will have the results of early next week- to ensure he's getting the right antibiotic. My instincts tell me we may be looking at a new bacteria, but we'll see. For the time being we're continuing the 4x daily breathing treatments and finishing the steroid burst, and he started a probiotoc to help with the caustic effects of some of his other meds on his poor little bottom. IN general, he was given a n impressive bill of health by both his Specialist and his Pediatrician. His weight is approaching the seventieth percentile, when 8 weeks ago he was barely skidding along above the tenth! His height is in the ninetieth percentile, and we were awarded copies of his growth charts as trophies of our success. In the end, the news was not only not terrifying, it was joyful and good and relieving.
This is where the whole hybrid emotion thing comes in. I have tears for all the good news we heard today. My unrestrained glee over these little (huge) triumphs is borne directly of my fear and sadness. I'm finding that this is the biggest impact Cystic Fibrosis has had on me. I have only just touched the fringe of my fear, but I know what it is. It's constant presence gives me strength to live in moments, rather than in days. It's the most absurd gift, this new ability to see the unadulterated bliss and perfection in a perfect second- the time between one blink and another when everything is good. The glint of the sun in the corner of an ambiguously blue eye, renegade baby-scented droplets of water gleaming seconds before they hit my face at bath time...a single, soft and deep sigh as he finally relents to sleep. Maybe that's why my desire to pursue photography is becoming impossible to quench. I want to see and show the world all those perfect moments.
And it has leaked into all aspects of my life. While I am by no means perfect, I have learned to let go of things that don't really matter. I'm not angry. My tangled mess of impure emotions- all of the bliss and the fear, all of the energy and exhaustion...has made me better. I'm better than I was. I am the cup that keeps running over.
(PS I don't really have any thematic photos for this passage, so I just picked out some of my favorite "perfect moments")
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