now, don't get me wrong. i invented the word "freaxious" for a reason. it's how you feel when you agree to an experimental shunt being placed in your newborn's heart. it's how you feel when you consent to strangers freezing your baby to death so they can slice and dice his heart. it's how you feel when a doc says, "on paper, this will work." it's how you feel when a cardiologist says, "i'm frightened now, to be honest." it's how you feel when your child turns blue and grey for no apparent reason. it's how you feel when a doc says, "yeah, this can't wait. i'll see him in my office tomorrow."
so, yeah, sometimes (ok, a lot of times) CHD really, really sucks.
but then again...
when i had blithe, i missed her first steps. she'd been cruising around and using chairs to walk for so long (literally, months!!) that it occurred to me one day that she was walking, and she had been doing this for days, and i hadn't even noticed when she started. (yes, bad mom, i know. haha)
but here's something i missed asher's first steps, too. same deal: he'd been cruising on furniture and playing with blithe and bram at the coffee table and holding on to his little riding car for a few weeks, and one day it occurred to me that he wasn't using anything else to walk anymore. he was just toddling around with his little backpack and laughing and babbling away. i have no idea when he started walking.
but my point is... asher walks!!!!!
here's something else so, asher doesn't eat much. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk...
but look asher eats. he'll eat the inside of his sandwich, or half his banana, or drink some of his milk!!!
i know we, as moms, tend to complain about dirty laundry scattered across our 4-year old's bedroom floor. it's annoying. i mean, seriously, how hard is it for them to put their clothes in the hamper?
but CHD makes me stop.
and look at the dirty laundry scattered across my 4-year old's bedroom floor. and smile. because it's not all that hard for him to put it his clothes in the hamper.
in the grocery store, when he's throwing a tantrum because i won't let him sit in the basket of the cart, but (terrible mother that i am) i make him sit in the seat so that he doesn't run off and so that i'll have room for the groceries, i get frustrated with him.
but CHD makes me stop.
and sit him down in the seat of the cart instead of the basket. and smile at my own frustration.
in the hospital cafeteria last week, everyone saw two little kids dancing.
my friend and i saw dozens of little miracles in those two little kids dancing.
asher's got crazy hair and a wicked short temper. he shrieks and only dogs can hear him. this morning, on our way to his classroom at school, he cried and told me that i'm mean and i don't like him anymore because i didn't zip up his coat when we left the office. yesterday, he threw a dinky car across the living room. on saturday night, he turned grey in his sleep.
last week, asher got a hair cut, and he looks so grown up. and he got a time-out for yelling at me. and he shrieks when he's happy. this morning, he went to school. yesterday, he was playing with dinky cars. on sunday morning, he woke up.
yes, thanks to CHD, i live in fear of the day a cardiologist discusses turning off asher's pacemaker. and thanks to CHD, my baby's torso is covered in scars. and thanks to CHD, i worry that i'll brush off the wrong symptoms because, meh, i've seen him worse.
but thanks to CHD, i breathe through the tantrums. i enjoy walking him to his classroom. i live for half-eaten lunches and pictures on the walls (literally, on the walls... he isn't always a fan of paper).
asher should be dead 15 times by now. because of CHD. this disease has brought more pain and fear and suffering into our lives than should be allowed by nature. but this disease has also brought more miracles and love and life into our lives than should be allowed by nature.
today is the first day of CHD Awareness Month. so i wanted to focus on the good that has come our way because of asher's heart. it's too easy to get stuck in the crap, to focus on the surgeries and the meds and the appointments and the complications and the fears and the dread and the anxieties and the nausea. and yes, i'll be happy when CHD doesn't exist anymore, or when the course for HLHS is no longer "palliative" (meaning, "let's try to keep him alive as long as possible, but it's still terminal."), or when everyone i know and everyone i have yet to meet gives money to CHD research, or when no more families lose their babies to the most common birth defect, or when CHD no longer kills more children than all childhood cancers combined. i will be deliriously happy when that happens.
but in the meantime, CHD has taught me this CHD has taught me to enjoy life. to cherish the little things. to see the bigger picture.