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.

One thought on “rewards — finale

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