Here we are, a month into having 2 children with CF. A month in, but a lifetime of dealing with this lies ahead. It's chronic. It's there every single day. My girls will never get a break from taking medicine or breathing treatments. I'm admittedly still overwhelmed most days. Giving more than 20 doses of medicine per day between the two of them, fitting in the chest PT and breathing treatments every day, keeping the equipment sterilized after every use, assessing and managing the symptoms daily, going to the appointments, frequent trips to the pharmacy, communicating with the doctors, etc., and doing all of this on top of caring for a newborn, a 4 year old, and a household. I am tired. It's double the work, double the meds, double the emotions, double the doctors visits and trips to the pharmacy. But this is the hand I've been given and though I don't understand it and wish SO badly I could change it, I will press on and do everything I can do for my girls.
No matter how much work it is, how many doses of medicine I have to give in one day, or how physically/mentally/emotionally draining it is, I will do whatever it takes to keep them healthy.
And on days when I feel weak and like I can't go on, I pray God will carry me through and give me the strength I need. One thing I know for sure, as long as I have breath, I will be by their sides holding their hands, helping them tackle this disease.
My sister sent me this song the night we found out and its still just what I need to hear.
Just be Held - Casting Crowns
These words echo in my head daily, "hold it all together, everyone needs you strong...life hits you out of nowhere and barely leaves you holding on." But "there's freedom in surrender, lay it down and just let go".
"Cause when you're on your knees and answers seem so far away, you're not alone, stop holding on, and just be held."
