when the world keeps going but yours has stopped…(part one)

ah, yes.

selfies with besties at the beach. church services back in congregation. your littles in the prettiest mask walking into dance class. the kids training for purple belts at karate. pool friends, with their wet hair hanging in their faces, sharing popsicles on beautiful warm sunny days. pedicures at the newly opened salon and of course, dinner dates, cheering a glass of sparkling wine to be “back together again”

stores are reopening and i just received an email with the subject line:

“life after the pandemic.”

and i see it. it’s clearly happening. society is opening up and her short term memory is being celebrated away with the next hair salon appointment.

life is happening.

except the virus is still very well imminent.

in the beginning of covid-19 when everything was in the “red phase” so many people would say to me, “you must be so anxious, so scared for your daughter” and my reply was always the same,

“actually, no. i’m relieved to see so many people at my level of awareness. being mindful of staying home when not feeling well, washing hands more frequently and fervently.”

i was ok.

i was somewhat relieved.

if anything, i worried something was wrong with me. for being as calm as i was. but i knew in our state, precautions were being taken, almost over the top (don’t worry, there are many people that will say it was too extreme)

and i’m not here to debate politics or the differing views on how to handle this virus. whether it was made in a lab or it’s a conspiracy theory.

what i am here for is to shed a little light on being a parent of a child with a life threatening respiratory illness, in the middle of a life threatening respiratory pandemic.

this is my truth.

and it’s taking its toll…

“bad things happen to good people”

i read Harold Kushner’s words in the title of this piece quoted by Hal Urban in Life’s Greatest Lessons: 20 Things That Matter, just a few weeks after M was born.
it was amidst the turmoil of finding out about her having cf.
and it’s never left my mind.

and the author went on explaining that it really depends on our constant thoughts and choices — how happy our lives will be.
i can choose to let the bad thoughts manifest and keep myself in sadness, or i can choose to be happy, positive and see the joy that surrounds us everyday.

most of the time, i choose joy…

but worry and fear are sneaky emotions…

i might seem fine:

smiling at work (well, it is my job after all and it’s a pretty awesome one 🙂

enjoying a rare date night out with my husband…

happily celebrating someone’s birthday…

energetically picking my child up from school…

or hysterically laughing at the grocery store with my husband over a cheesy marketing ad, then hiding in a random aisle pretending we really need an embarrassing product but it’s just to escape having a “stop n chat” with so and so

what i don’t show is the fear of tragedy. how it can happen anytime, anywhere.

6 years ago, february 23, 2012 was a horrific day for our little family.
when Jr. was 6 months old, he and Sr. were in a serious car accident. Sr had a broken neck, in three different places.  he was in the ICU and required emergency neck surgery almost immediately…
i remember receiving a phone call from a stranger informing me of the accident,
and not knowing how to operate my phone to find out the hospital where they were transported.
i remember not being able to drive to the ER.
i remember the deep pit in my stomach — the gut wrenching pain — wondering how my sweet, innocent 6 month old child and husband were going to be.

the fact that Sr wasn’t paralyzed was a miracle and i know Jr was held by angels, as he had not even a scratch.
a few days later i had to clean out the car, and it was a grim site, with a bloody baby blanket crumbled in the front seat and broken eye glasses squeezed in between the crushed windshield.

it was a terrible time following.

Sr was in constant pain and had to be in a neck brace for 6 months — all that time he couldn’t work, take care of the home, and sadly he wasn’t able to hold Jr.
and then there I was, flinching at the slightest sound of any siren or the notification of an unknown call on my phone, when i instantly would be brought back to that horrible night.

we relied on our parents not only for child care, but also with adult care — a humbling time, indeed, for new parents to an infant.

but we made it through.
…because we have an amazing village and we could not have done it alone. without the help we received, we seriously would have been homeless.

so as time went on, we found our groove again, as a little family of 3.
so much so that soon we were going to be 4!

M’s entrance into the world was a long and difficult one, as to be expected from any princess 😉 minus some fevers and antibiotics right away, nothing was out of the ordinary and there was no indication for cystic fibrosis, such as meconium ileus.

once something really tragic or bad happens in life, i guess i naively thought we would be immune from anything happening…we fell down, hard, but we got back up and we rebuilt. i mean, we had one huge blow, no way could we have another…and so soon!
i now see how selfish and self centered (and quite stupid) that was.
we definitely were not prepared for her CF diagnosis as a new tiny baby girl.

and so it crept back.

that deep pit in my stomach — the gut wrenching pain — wondering how my sweet, innocent 3 month old child is going to be.
now with flinching at sirens, i also fear fevers, and colds and coughs and germs and bacteria.
because if something bad happened before, and then again…who’s to say something else wont go terribly wrong?

bad things happen to good people.
and we can choose to let that define us or let that form us to forage onward, enjoying each precious possible moment. being mindful of the laughs, the sunshine on our skin, the tiny snowflakes falling, the smell of the lilacs during their quick bloom, the way a gentle father helps his son after he falls, or the kindness of a stranger and the amazing people that reach out to show they care for you.

im not saying i do this on a regular basis. but i am saying i am trying. i am doing my best.

momma always told me there’d be days like these. 

i did one of those mom moves this morning — the one where absolute chaos is going on around her and all senses are overstimulated and if there were outsiders, they would just see a swirling cloud of a loud mess,

but in the center, i just stood.

phone ringing. message after message, who do we owe more? but one call that particularly stands out is from the speciality pharmacy.

since our insurance changed in the beginning of the year, we haven’t been able to get M’s super expensive medicine. she nebulizes something called, pulmozyme, every evening. it’s a mucolytic agent, which thins her mucous to help her body to get rid of it easier in conjunction with her cpt or chest therapy. it comes refrigerated with reusable ice packs and all.
so the stress of our dwindling monthly supply, as it nears the end with no reorder in sight, is mounting.

the machine we use daily to sterilize the nebulizer parts is humming away on the counter, and at this particular moment, unbeknownst to me, is leaking.
all over the counter and floor.

while paw patrol plays in the background, my son is begging me to check the email for the tracking of his pocket racers, but they are on backorder.
he has now loudly proclaimed that i’m not paying any attention to him, that i do not love him and that i love M, more.

my email is pinging away with hot bookings from one of my agents. this is fabulous, but being that i can’t even go potty without two crying kids following me around, sending emails back to them is impossible.

my text messages are ringing, it’s my mom asking me about babysitting or gymnastics drop off, i can’t remember which, to be honest.

M is screaming horrible dramatics because she wants a popsicle or a “nee nee.” whatever she can get. both, to which i am adamantly saying “no.” this has brought her to the point of pulling down my yoga pants.

i want to pull my hair out and scream.
or bang it against a wall — i am not picky.

but i simply eat the last remains of a  bowl of warm, soggy cheerios and slowly, and purposely, enjoy each honey-laden, almondy bite. (dairy aversions call for almond milk)

all i hear is the plastic menchies spoon scraping against the elmo bowl. i even found a piece of a sweetened, delicious strawberry at the bottom.

i don’t hear the cries, the whines, the rings and dings. the dripping from the wabi sounds like a waterfall one would hear at a spa, while getting a luxurious massage. a tornado of activity and stress around me like a swirl and i was the eye of the storm. calm and cool.

who is this girl??

my mom just bought me a bracelet this week. i’ve been begging her, or C, for it. a mantra band, actually. i asked for “choose love” to be printed on it. a reminder for myself, that in these exact times of frustration, of trying my absolute hardest and still drowning in life’s stresses, to choose love.

ha! for what? for whom? geeze, i actually argued with my own brain in this moment. choose love for wanting to scream my head off?
choose love for wanting to run away?
choose love for hating this disease my child so unfairly has?

i know most of this craziness is typical mom life stuff.
i’m not special.
we all deal with this. though, maybe we all need to talk about it more instead of “pinterest-ing” our lives as such perfectness…but the added challenges with CF tick me off! they make me go off the handle.

tick tick…boom!

but before i let my emotions heighten, i  am reminded by my husband’s gentle text from the night before when i had a previous freak out,

“have you looked at your bracelet today?”

so i looked down and saw the words.

choose love.

choose. love. 

so i chose to love those soggy cheerios and i chose to love myself.

i ignored everything around me. i gave myself a gift of 60 seconds and focused on one thing.

the rest can wait.
i love these kids so much, that i won’t let this overwhelm me.

i am better than this.

then, like that;  i was snapped back to reality.

a huge puddle of the floor from the sterilizer and silence from the living room — our cable has been turned off from lack of payment.

and i still had crying children.

so i sunk down to the floor, to my knees, and hugged my kids.

…in the longest, loving hug i have ever given. and i got in return not one, but two amazing hugs that i have ever received.

the rest can wait.