It’s 10pm Friday night and my 15 year old is asleep.
- hanging out with friends
- on the phone
- begging to stay out late
- asking when she can start dating
- going to the mall with friends
- attending high school dances
- participating in clubs or sports
- on social media
- . doing teenager things
These things have been stolen from my child. These experiences my child won’t EVER get back.
But you know what? She’s ok. She says high school wasn’t her thing 💜. She finds joy. She knows she’s loved. She understands and accepts. She internalizes any sadness (gotta work on that). She hopes. She dreams. She makes plans. Her journey won’t look like the average teenager, but it can still be amazing.
My daughter is tough. God made her tough, so she could conquer CF & asthma together.
My daughter is feisty. God made her feisty, so she could keep her spirit up during hard times.
My daughter is opinionated. God made her opinionated, so she could make decisions about her care.
My daughter is mouthy. God made her mouthy, so she could advocate for herself without fear.
My daughter is loving when she is loved. My daughter is loyal when she is valued. My daughter is protective of those she holds dear.
My daughter is not defined by her illness, but it is part of who she is. Every single minute of every single day it impacts her. My daughters doctor reminded her last week of the real long term risk of needing a lung transplant some day.
Let that sink in…. LUNG TRANSPLANT
Any CF patient, even one with a “reasonably good” FEV1 of 86% at age 15, is at risk for deterioration if they aren’t careful, and even if they are!
- Don’t question our parenting decisions.
- Don’t question our education decisions.
- Don’t judge my kids attitude some days.
- Don’t make comments if my kid sleeps all day.
- Don’t try to compare illnesses.
Number 5. Every parent of, or person living with a serious chronic illness, wants you to hear that. Do not compare temporary, inconvenient, or less serious illness with that of a person whose illness can not only steal their quality of life, but potentially their entire life someday. We don’t comment but we find it insensitive, exhausting, and saddening.
Trust us. You don’t want this journey. It’s exhausting. It’s expensive. It’s depressing. It’s disheartening. It’s not something you want to compete with. No, your kids allergies aren’t comparable to my kids CF. Yes, someone likes to repeatedly make that comparison to me. Share with us your bad days. We have compassion. Have a sick kid? Call me and I’ll cook you dinner. Need to cry it out? I’m the best crier in town. Just maintain perspective is what I’m saying.
Love my family, but don’t feel sorry for us. We’ve got this. Gods got us close. Gods got this. We are living our best life. It just might look different than yours.
Thanks for listening. I had one of those “seriously?” moments today, and it helps me to write my frustration away…