we had a 3rd sweat test for baby girl. 

it actually went better than expected, and we brought along little C, too. 

we figured it would be best for him to see what’s it’s like, since now the dr’s feel he should have one, as well. and we talked it up for him to help soothe baby girl while the “scratchy things” were on her arms.

so while sulfuric acid and electrical stimulation devices are placed on baby girl’s arms, he sang the full version of “let it go” and included the musical interludes, by humming, of course, and he reenacted the same movements elsa does as she builds her ice castle and lets her hair down. 

oh, and he also changed around the pronouns to fit his male gender. 

the nurse was agog and we were all truly entertained, little sister included. there were no tears from any of us, baby girl and me, and he even finished with a full on bow. 🙂

a definite success!

it was a nice contrast to how every other doctor appointment and test has been…gosh, even little C’s 4 year old check up visit was mainly spent with me answering the pediatrician’s questions about CF; mostly the impact it has had on us as a family — financially, emotionally etc. the words coming out of my mouth were text book:

“we are doing okay. getting by. it’s rough, but we are surviving.”

[ insert big grin here] 

because, that’s me! i smile! 

even when i don’t feel like it. 

it shows i have it together! 


…poor kid gets three shots and his mom is blabbing about some boring disease. 

*minor props to myself; right before his shots, i paused and said, “i’ll talk about this afterwards.” and then i focused on him. 

but the pediatrician’s questions really got me thinking…

i mean, yeah. 

originally, while i was pregnant, we were all just trying to prepare the navigation of a three person household to a FOUR person. 

from the excitement challenges of an energetic 3 1/2 year old BOY to then introducing him to being a big brother. 

no more only child with solo attention. 

ha, there were moments, when i first brought baby girl home, that i was absolutely sure, absolutely positive, little c was a sociopath.

no doubt! 

turns out, that was totally normal;

for he to act like one, and for a new momma to believe it. 

even if no one else talks about it, ’cause they don’t…trust me, it’s normal. 

*and side vent: when you have a second baby, it’s totally harder than the first, because you have SO MUCH MORE help with your first babe. 

second kid? people are pretty sure you have the hang of it and there’s just not as much hands on for help. yet, you have TWO kids, instead of one. 

we were totally blessed to still have amazing family and friends help us, albeit our group was just smaller.  

so while we had all of those “normal” things to deal with, we have also had these doctor appointments, sweat tests, phone calls, stool scrapings, enzymes, poop consistency, constipation- side effect of enzymes, the science of this life threatening genetic disease and plain ol’ worries.  

it’s been a lot. 

and when a spouse works 60+ hrs a week, things can get, overwhelming, even for the most seasoned of mommas.  

i promise, i’m not complaining, and there is always someone out there who has it worse than i, and i’m grateful for my little blessed life, but this has not been easy. 

not one bit. 

but i do have a most amazing husband; 

he keeps us smiling, even through our tears

…because we have to! 

it’s not as bad as it could be…

it could always be worse. 

and i need to create a relatively even keel for little C. 

i’ve tried my best to be mindful of him throughout this process. 

i’m sure i failed, and he’ll talk about me to his therapist when he’s 25, 😉 but i can always say to him, “i’ve done my best, and i’ll always try harder to be even better” because he deserves that. 

we all do. 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s