one month.

30 days.

720 hours.

everybody i know, agrees, there are simply not enough hours in the day.

enough days in the week…

enough time to get everything done that they need to do, and still have time for what they really want to do…

so what would you do if you magically received an extra month this year?

vacation? remodel your home? read? catch up with friends?

me? i’d just like to sleep.

whatever your preference, i’m sure we can all agree that we could get a lot done in that extra month!

now imagine, that you are forced to spend one month a year — two hours a day — strapped to machines and inhalation devices to just keep yourself healthy, and cleaning and maintaining those devices so they are ready for the next time…

just so you can breathe.

breathe.

most of us take it for granted…

without even thinking about it, it comes so easily to us.

i never really gave it a second thought.

when my husband and i were daydreaming about our second child – our little spitfire, Madelynn, i thought our biggest problems were going to be balancing the challenges of caring for a newborn along with keeping her sweet, older brother happy… with laundry overflowing, peanut butter smeared everywhere, resigned to the fact that for a few years, everything in the house was just going to be sticky, but doggone it, we would be so happy!

but on the day that we got the call, when she was 7 days old, that her newborn screen was flagged for possible Cystic Fibrosis, something was set in motion that became so much more…

Cystic Fibrosis steals time.

not just that it is a terminal, life-shortening disease;

we do our best not even to think about that…

but every day it steals those two hours and more.

time for many doctor visits

lots of tests…

quality time that could be spent at a playground is spent holding a screaming newborn baby during blood draws and sweat tests, trying to show her what bravery looks like while a little piece of you dies inside.

time that you would love to have to yourself is spent meeting new doctors… specialists who poke and prod, examine and swab her throat to see what fun new culture she’ll grow.

lots of time was spent on trial and error to figure out how to get her to take her pancreatic enzymes before every feed. while she swallows them like a champ now, since age 1, i remember asking the doctor how long she would need to be taking these enzymes – a week? a few months?” and his answer was,

“well, forever.”

soon, we added nebulizers, and this sci-fi straight jacket device that shakes her 14 times a second to loosen up her mucus and clear her airways so she can breathe easier.

sounds like a great concept but go ahead and explain it to a one-year-old!

but we did our best to get it done, if we could get it done at all, giving up well over an hour or more twice a day (three times a day when she’s sick…) for something that now takes “only” 40 minutes.

tick tock…

the calendar keeps on flippin.

then there’s the cleaning of everything. it all must be cleaned and sterilized.

everything.

after every use.

bacteria is present everywhere.

most of it isn’t harmful to you and me. but it is to someone with CF. these bacteria can be found in water such as lakes and hot tubs water fountains and dirt.

dirt!?

it’s everywhere!

the fear of our daughter contracting these bacteria, which can then live inside her lungs with all of that extra mucus and thrive and make her sicker and struggling to breathe… that fear in my heart is a never-ending, gut-wrenching burn…

but how do you not let your little child enjoy life because it could harm them?

if you force them to live in a bubble, how is that a life?


so you just have to adjust

and this is our struggle, every day.

you miss the birthday party, because she needs to get that treatment done.

you decline the evening out with friends, because how do you expect a babysitter to be a part time respiratory therapist?

before you make any plans, you as a family, make sure that she won’t miss her airway clearance.

so you do your best, and you pray for all the people who go to work every day, working toward another breakthrough that will open doors towards new treatments.

i invite you to imagine someone that you love and care for — the kid next door; a niece or nephew; younger sibling; your son or daughter; someone that you would do just about anything for…

imagine them losing out on all that precious time every year, and how angry and frustrated that would make you, because i don’t mind telling you it really pisses me off.

so thank you, to each and every one of our people who fundraise and spread awareness.

we are truly blessed to have all of you on board in this effort to raise money for research toward a cure…toward longer lives for these patients…

toward getting that lost month per year back.

“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.

if you look for the bad, you’ll surely find it.

but if you look for the good, my friends, you’ll be delighted, even if for just a moment…


we were rearranging our living room to fit the Christmas tree. we have a tiny house so it becomes like a game — the Tetris of sliding coffee table, end tables and couches around to make room.

as i was trying to maneuver cords from the lamps, phone chargers, and the laptop, somehow they became tangled with the cords from M’s treatment cart, and i felt a tingling burn starting to creep up in the back of my throat.

and any where i tried to put the cart, it just looked out of place.

a three tiered ikea rolling cart painted in a cheerful pastel teal, adorned with hello kitty stickers, holding the clunky machines, each with their awkward hoses and tubing; a jag to my memory; that these are things we use multiple times a day.

a constant reminder of her disease.

there is never a break, even on days when’s she’s well. 365 days a year with at least 2 times a day, rolling this cart out and forcing her to waste 20 minuets of her life at a go.

as cheery as we were, with the kids bouncing around with excitement, i turned my back and kicked the cart, my voice cracking when C asked me if the tree appeared straight. if i let on i was upset, it would ruin the mood…so i pulled myself together.

once the lights were strung, courtesy of both the C’s, i begrudgingly started M’s nightly treatments:

hating the struggle with her.

hating the gathering of multiple supplies.

hating the noise both the vest and the nebulizer make when turned on.

hating that she has to do this.

hating how her body needs this.

at that same moment, my husband, who snores loudly, loses his wallet on a daily basis and leaves cabinet doors open relentlessly, noticed my contempt, astutely read my mind and quietly and gently said,

“babe, if you’re going to look for the bad, you’ll surely find it. please look at how good this is for her. she needs this. she needs us to guide her to appreciate this technology that will keep her life healthy happy and prolonged.

this is good. it’s all good for her.”

i must admit, i have lost my way, as we sometimes do. i had begun to grow ambivalent towards the treatments, towards these machines again, these huge, loud, time suckers.

but as he spoke, my anger began to soften and i saw the cart in a different light. that in actuality they are there to give her more time to enjoy life.

and as i changed my perspective, i looked down and saw this beautiful little soul.

the cart is part of our home, and snuggled in between the couch and an end table.

because it’s hers.

because it’s good for her.

20 years ago this month, i moved to NYC.

i had big dreams in my heart of performing musical theatre on broadway.

but i was so insecure, comparing myself to the amazing singers and dancers around me that i let that control my emotions and i would freak out at auditions, sounding like a meek, out-of-tune mouse. 😆

#hotmess

i kept working at it, though.

hard.

couple steps forward, many backwards, with oceans of no’s, but i’ve kept pounding the pavement…

and now, i am truly blessed to be a working actor and model; while being first and foremost a mother and a wife.

yesterday, i had an opportunity to book a job; all i had to do was show up.

and the dramatic irony was that i couldn’t.

with M’s Cystic Fibrosis she requires multiple treatments a day.

missing them is not an option, so i respectfully declined.

and it

broke.

my.

heart.

and while i am so angry at this disease our sweet baby girl has, i have never been more empowered to spread awareness and help find a cure for this life shortening illness.

i’ll never stop.

💪🏻💜⭐️

stop the world — i wanna get off!

okay, well, maybe for just a pause?

we all have busy lives, with highs and lows.

from no kids to 11 kids, to grown up kids, to teeny-tiny baby kids — its hectic, it’s crazy and we love it. (for the most part)

but with M’s added health stresses and her intense maintenance routine that is required to help her stay healthy, it’s become a larger juggling act that i just can’t seem to master.
i drop a ball and pick it up, but all the while i’ve dropped another one and another and another.

rinse, repeat.


we got some disturbing news regarding her latest x-ray.

she’s showing progression of the disease. her airways in her lungs are becoming somewhat thicker with mucus.

see, all of our bodies produce mucus, it’s a good thing, but her body produces too much so then it’s difficult for her to remove it; in turn, all of this extra mucus in her lungs becomes a breeding ground for bacteria; hence the many different nebulized medicines and her use of the vest. (this compresses and shakes her to loosen up the mucus.)

her digestive system, primarily the pancreas, also gets clogged with mucus so she must swallow pills before she eats to help her body digest food.

this is why her airway clearance, or as we like to call it, “shakey-shake” is so incredibly important.

this is why we get so upset when she fights us on her treatments.

needless to say, C and i were devastated.
feelings of helplessness sank down deep into our hearts, and our stomachs were sick with angst.

we have this beautiful bright little child but yet there is this silent disease taking over from the inside.


a while back i had written about a program called Casey Cares which helps families with medically fragile children and in our case, children with critical and/or life threatening diseases.
it took us months to fill out the paperwork because we didn’t want to face the reality that she is considered eligible, but when we finally did, we received a wonderful gift: tickets for our whole family to enjoy the day and meals at Hershey Park.

we were ecstatic. little C’s birthday was coming up, what better way to reward him for being an integral part to M’s treatments?? he urges us to do them, he helps with connecting the tubing, the hoses and turning on entertainment, of course.

this is why you donate.

i promise people are grateful for others’ generosity, as we are.

thank you Casey Cares for giving our family a pause from our everyday reality.

thank you for letting me stop the world, my world, even if it was for a day.

rewards — finale

as M shut down, i did, too.

so many turns on the hamster wheel, with zero sleep, wears on everyone.

if i were a great writer, i’d be able to convey the feelings that a mother experiences watching her child writhe in pain, and watching her fight like hell to be free from these sci-fi like machines.

i’d be able to describe the absolute desire to just cure her from this horrible, icky disease.

but i’m not. i’m just a mom. telling my story.

we had been trapped in her hospital room for days, each one worse than the next.

i cried to these doctors and nurses, who, a few days ago were strangers to me.
i cried when i was at work, on-air during a segment selling a rhinestone top, the host was talking about cherishing the moments. (it was 4 am, and i’m hoping it just made my eyes sparkle.)
i cried to my friends, my family.
my husband and i, were just doing our best for the other. trying to maintain any sense of normalcy for our older son, yet fighting over trivial items, like who ate the last tasteless hospital chicken nugget.


i begged for M and i to be let out for a walk.
for fresh air.

it had to travel down various chains of commands, but once finally sprung free, i was informed we only had a mere 45 min. big tears in my eyes as M and i, hand in hand, walked through the big double doors to the outside world. her little mickey mouse face mask fitted onto her face.

before we left, she demanded she wore her butterfly wings without knowing her irony of being free and flying through the little park that was adjacent to the huge hospital.

20 glorious minutes later of letting her run and play in the grass was exactly what our spirits needed.

as we walked back to the jail, my heart became heavy once more. my stomach tightened into knots and my breathing became short and quick.

once inside M became infatuated with the self playing grand piano. she refused to keep waking with me and as my breathing increased, so did the the waves of panic washing over me. we were supposed to be back upstairs in 5 minutes! as i tried to wrangle her, she ripped her mask off and ran away from me, laughing and thinking this was all a game.

as her mask fluttered to the dirty hospital floor, i tried to unsuccessfully catch it. once it dropped, the only thoughts in my head were what a horrible mother i was for not bringing a second mask with me. i frantically searched the area for a stand with hospital masks, but they all were adult size, way too big for her tiny little face.
she’s now running around being exposed to all the germs.

how could i have let this happen?
how could i not think to bring another mask? she’s getting sicker by the moment and this could have been prevented.

this whole hospital stay could have been prevented, if only i,
if only i….

…didn’t fail as her mother in every aspect of her treatments.


you know when they say, “everything happens for a reason?”

yeah, i kind of really hate that phrase, too. but in this moment in time, it was true.

out of the sea of a thousand people, i see my favorite nurse — the same one who sat with me for hours upon our arrival a few days prior. we lock eyes and next, i’m bawling mine out on her shoulder. simultaneously, i see another kind face, who immediately starts playing with M, and gives her a new mask. she has a hospital badge on and stays close by me, playing with M, while i have my meltdown.
i’m crying, stamping my foot with my makeup running down my face.

not one of my better moments, that’s for sure.

but in these terrifying moments of utter exhaustion, complete fear for my baby girl and feeling absolutely trapped, i had these two sweet souls comfort me.

T gave me the confidence, she reminded me to speak up, that i know my daughter best. this other kind-hearted person, took care of my child while I shrank down to nothing in the midst of my emotions.

i am so grateful for these two.

and as i walked back up to the pediatric floor of the hospital,  my sense of dread was turning into determination.

determination to get my daughter to comply with treatments, to get well again so we can go home.

as the aids, nurses and respiratory therapists came in, i started speaking up.
no longer was i letting them pin my daughter down…it wasn’t effective.
i refused middle of the night interruptions.

we got one of the best nights sleep (well, that one could get in a hospital.) and when rounds began at 6:30 am and the specialist came in, i calmly explained how the schedule of things was not working for us. the treatments were becoming counter-productive — instead of letting her be a 2 year old, every other second we were shoving her into a vest or shoving a nebulizer onto her face — so she was refusing all things good for her.
if we let her be a child, go on her schedule, we will have better results.

if we stop trying to force her to take a foul tasting antibiotic and if we stop trying to trick her with the medicine, we would have better results.

i spoke up and i advocated for my child.

and you know what?

i was right.

within the next two days, she started swallowing her own medicine again.

i requested we stop the vest and instead, we do chest percussive therapy.

and she did her treatments! (better-ish)


once she showed improvement with her cough and her mucus production declined somewhat, and she was complying with her treatment regime, we were able to
GO HOME!

as i was packing up her room, her Dr came in…he said to me,

“i would just like to tell you, that even though the circumstances that brought you here are less than prime, have you noticed that you’ve seemed to have found your voice? you appear much more confident for yourself and for your daughter.”

“i’m just so angry though.” i replied.
“angry that she has to spend time wasting her life, staring at a screen, to occupy herself while doing her airway clearance.
angry that we fear her future.
angry she has to deal with all of the aspects of this disease.”

and he said, “you know what?”

“she’s angry, too.”

upon hearing this, i cried so hard…so very hard. 

“never once did i think that she was angry.”

he chuckled and kindly said, “that makes you human, a devoted, loving parent.”

the rewards of being a parent to a medically fragile child are definitely not sugary sweet, but they have taught me to use more patience, give more grace and use less judgement. they are teaching me to balance out all of the icky crap, with more fun, intense love, supreme kindness, and with the utmost joy and peace.

i will continue to be open to these rewards.

this is my promise to you, baby girl.

rewards — part two

“i know this must be difficult for you, but it really is the best thing for her.”

i still hadn’t responded to the doctor.

partly in the hopes that, maybe in my 60 seconds of silence, he would’ve changed his mind and said, “you know what, based on your shock and full on terror, i rescind my decision. she’ll get better at home after all. have a great day!”

and partly because i just couldn’t form the words…

i’ve been the one who has been most realistic with this disease.

i’ve been the one who has outwardly cried the most.

i’ve been the one who has worried the most…

i’ve been like this ever since the day we received the phone call saying her newborn screen showed the cf gene.

then we received her blood work confirming both DF508/5T deletions.

then we received the news she was pancreatic insufficient and needs to take pills every time she eats for the rest of her life…

i’ve been the realistic one, all the way.

C, on the other hand, and some close family members, had other opinions. along the thoughts that this was just a formality for insurance companies.

that she didn’t really have CF.

or, God will heal her.

or M’s cf won’t be as severe as what i had been reading about…

but even with me being the most realistic,

i  was stunned by this news of her being hospitalized.

i was shocked.

and downright flipping angry.

what the heck have i done wrong now?!

but it’s not about me.

this is about her.

and, whether we like it or not, it’s about this stupid disease.

we arrived at the hospital after packing only a few things because we (wrongly) thought for sure this wasn’t really happening and we would be home by the weekend.

i remember staring and being quite solemn at the check in desk when i received my bright blue “visitor” tag and M only got a sticker that said “terrific” on it and it smelled like a strawberry.

she wasn’t a visitor.

i remember being a zombie while M was happy to see the big fish tank in the hallway of the children’s hospital.

i thought of those fish, swimming back and forth in that beautiful tank, and felt utter sadness and complete despair as M watched in amazement, having no clue on what we were about to embark.

and then walking into her room and seeing the machines, her jail-like crib and the bright neon green signs everywhere stating we were on reverse isolation.

but i didn’t cry.

not until i saw one of M’s regular CF nurses, T.

she was gowned up, came right over and gave me the biggest hug. this was the first of two times i would cry my eyes out on her.

it was such a relief to see a familiar face in such a sterile, strange, depressing, lonely and heartbreaking place.

next thing, there was a resident gowning up and knocking on the door. i had just started nursing M and was going to meekly and uncomfortably let him in, but T politely and authoritatively said to the resident; “please come back in 15 minutes, she just started nursing” and while this resident heaved a big sigh since he had just did the whole rigmarole of putting on a gown, gloves and a mask, he reluctantly obliged.

T turned to my wide eyes and said, “that’s why I’m here, to show you it’s ok to speak up for yourselves. there will be lots of people coming in, you’ll need to know when it’s ok to send them away.

and then she stayed with me for the next 3 hours.

most importantly, she stayed during the time the nurses came for M’s IV.

it was a parade of nurses and child-life specialists (they basically blew bubbles and held an iPad) carrying M down to the tiniest, most sterile and un-kid friendly room, ever.

M is crying and has a pained look of confusion on her face.

it will be forever imprinted on my brain.

she really does a super job holding still while they begin to insert her IV needle and i’m torn between staying back to let the nurses do their job and rushing over, whisking M away and saying,

“oh, Dr M told us to stay home, we actually shouldn’t be here! bye!”

between my two realities happening before my eyes, they get the IV inserted. i only know this because of the sing-song chant that they were done and how well M did combined with the amount of blood i saw everywhere. almost too much blood for a tiny IV into a little girl?!

i’m a mom, though. so any blood and tears from her child is too much.

i look over to T and with a knowing look, she reassures me to go comfort M, that my motherly insicnt was spot on, go to my baby girl.

once back in the room, i learn the ways of the hospital.

it sure ain’t the hilton.

due to M’s CF, she can’t go into the children’s playroom, nor can she play with other children on the floor. if she is to leave the room she must wear a face mask. any medical professional must gown up before he or she comes in contact with her. this is all to protect M from any germs they have. knowing it’s for M’s protection helps make it somewhat easier, but we were basically confined to her tiny room for a week.

i was also to learn that every time M was to eat, snack and nurse, i must ring the nurse for M’s enzymes — the same enzymes baby girl has been swallowing for a year on her own — now we were to ring and wait for a nurse, explain our needs and then…wait for her or him to come back with these needed enzymes.

sure thing, let me explain waiting to eat or waiting to have instant comfort through nursing to my 2 year old. she’ll totally understand.

ha ha. no way.

every time i thought i had a minute to catch my breath, whether it was to look at a text message or go potty for goodness sakes, someone was coming in for vitals, antibiotic administering or her airway clearance.
it quickly became a “hamster wheel.”

no end and no beginning.

6 am was the start of rounds and the attending physician would come in surrounded by his 15 fellowship students.

i honestly didn’t know who to look at except the attending was definitely the most cocky, confident one speaking.

next up, the respiratory therapist came in to administer nebulizers and perform airway clearance.

approx 10 min of albutorol

and then 15 min of hypertonic saline.

followed by 20 min of the vest.

and being with how non-compliant M has been with these treatments, add on another hour of struggle to the hour of treatment.

it’s close to 10 am and the floor nurse is strong arming me that we are behind with vitals, which is another struggle in itself as miss M does not like the thermometer poked into her underarm — but who would?!

i haven’t had a second to give her breakfast and now it’s time to order lunch…

meanwhile the pulmonologist has been observing us for the last hour.

he was able to get a real upclose view of the struggle.

the respiratory therapist is back, is it really 1 pm already?

more nurses.

more treatments.

more tears from M.

i have been saying, a million times by now,

“its good for you baby, you’ve got this”

though how much of my words did she really hear?

she was shut down. refusing all and every treatment.